Discussions By Condition: I cannot get a diagnosis.

help

I am 33 yrs old and about 8 or 9 years ago I developed a tingling sensation in both my legs. Within a month I began falling, I could be standing in one spot and suddenly just fall, like I couldn't feel my legs. within a 2-3 months I went from being a normal 25 yr old to not being able to stand on my own, extreme leg pain and numbness. I was sent for MRIs, CAT scans, blood work..I was seen by neurologist after neurologist each did test after test and found nothing wrong. My DR. even went as far as to say that it was psychosymatic that if I didn't go see a physiciatrist that he would no longer treat Me. The physiciatrist said that I was mentally fine. So, back to the drawing board. needless to say I quickly changed DR.'s. My new DR. took a look at all my previous blood work and found a slight B12 deficiency, but not enough to be alarmed about. things have gotten somewhat better, I can now walk with a cane and drive. but new symptoms are now showing, I have incontinence problems and trouble with bowel movements, I have clonus in both feet, my feet are always cold and a wide list of other things. I have tried every pain killer from injections into the spine to oxycontin. some worked too good, where I was a zombie and some were just a waste of time....so, here I am...still TRYING new medication combinations to treat symptoms but with still no closer to pin pointing the problem than I was when all this first started............I have tried to look for things and DR.'s on the internet, but I haven't the slightes clue were to start...anyone that can help any advice would be greatly appreciated.

7 Replies:

I'm sorry you have to deal with all of that! I did a quick search and found a case study that is suspiciously similar to your situation. Despite the similarities, PLEASE do not equate this with your situation. The nervous system is so complex that the reality of your case can be entirely different. First, here is the website (a download slideshow): http://www.uic.edu/com/ferne/pps/aaem_2006/ferne_aaem_2006_sloan_neurocaseconf.pps#497,32,Leg Weakness: Diagnosis ("Weakness: Diagnosis" should also be a part of hyperlink so you should cut and paste as a whole) There are multiple cases presented in the slideshow so don't get confused. Many of the relevant symptoms are listed on page 13 of 90. Here is what is described: a 27 year old male with numbness and tingling of lower body, cold feet, progressive weakness, difficulty with ambulation, some trouble initiating urine stream, (bowel movements are OK), and "clonus bilaterally with forced dorsiflexion." The diagnosis is:-transverse myelitis of thoracic/lumbar cord-brain plaques consistent with multiple sclerosis. If I were you, I would contact the professor who gave the presentation. Perhaps he can give you some direction. He might know something the other guys missed. His name is Edward P. Sloan, MD, MPH and he is a professor at the University of Illinois College of Medicine (Department of Emergency Medicine). I wish you the best of luck!

I found ya! Once again, I'm sry what u go thru. The docs did say something about it being pyschosomatic once b4 with me. I cried cause I didn't understand. Then when I had these MRI's done the doc felt bad and said u really do have a pysical issue. The problem is, I went to a neuro surgeon because the doc was concerned about eventually losing my bowel and bladder control in the future. The neuro surgeon said he was sry but there was nothing he could do surgically and I need to follow thru with neurologist because I have some kind of disease possibly Myelitis and MS but he could not help with that. I saw this new neuroligist and he was extremely rude and said there is not one thing wrong with u neurologically and actually the first thing he did was, he shaked my hand then asked me if I was cheating on my wife"? I was completly confused. I guess it turns out a lot of men will have serious problems with their health if this happens. I can't remember the name he called it but my Psychiatrist said he is completly off, as did my primary. so here i am again not knowing what the heck is going on. When u had your MRI, nothing at all showed up in your lower back, upper/thoracic spine, neck, or head? Because if u have ALS, it doesn't always show up in the brain. Please keep me posted how u r doing!

Please read my posts to the previous poster under the title of "problems" on todays forum. You may have Arachnoiditis. Sorry but the post to him was so long I cannot repeat it at this time. Good luck to you.

to you & cbalcomgo--They tried to tell me mine was all in my head too & I was just depressed. NO KIDDING!! Anyone of us going thru this kind of pain daily would be depressed too. I could not quite get thru to her that I became depressed after all the tests & no answers. Also cbalcomgo--the reason the neurosurgeon says he cannot help is because he can't. There is NO cure as of this time. Pain relief is the key. Any invasive procedures(epidurals,myleograms,spinal taps) may intensify the problem. That remark he made to you that he can do nothing in itself signals he knows it is arachnoidtis. Some Drs just won't use that word. More specifically it is Adhesive Arachnoiditis. Meaning the nerves are stuck together & kinda short circuit.